Medical Oncologist
CION Cancer Clinics
Surveillance for MLH1 carriers: which checks, and when | CION Cancer Clinics
The key check for an MLH1 carrier is a colonoscopy every one to two years, starting in early adult life. Women also need a plan for the womb and ovaries, and some carriers are offered stomach checks. This page sets out the usual schedule, how strong the evidence is for each check, and which symptoms should never wait for the next appointment. At CION Cancer Clinics, our oncologists explain what a gene result means for you and your family, and plan the checks that follow.
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Medically reviewed by Dr. Naresh GunduConsultant Medical Oncologist · MBBS, DNB (Internal Medicine), DM (Medical Oncology, AIIMS) · last reviewed September 2026, next review due September 2027
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On this page
- What checks does an MLH1 carrier need?
- Which checks are offered, and how strong the evidence is
- How the checks usually unfold over the years
- The words you will meet, in plain language
- Four things carriers tell us, and what is actually true
- What this page cannot tell you
- Common questions about MLH1 surveillance
The short answer
What checks does an MLH1 carrier need?
The most important check is a colonoscopy every one to two years, starting in early adult life. Women also need a plan for the womb and ovaries. Other checks, such as for the stomach or urinary tract, depend on your family history and where you are treated.
Why checks work so well in Lynch syndrome
Bowel cancer in MLH1 carriers usually starts as a small growth called a polyp. A colonoscopy finds polyps and removes them during the same test, before they can become cancer. Studies of carriers who keep to regular colonoscopy show far fewer bowel cancer deaths.
A plan made for you, not copied from a leaflet
The exact start age and gap between tests are set by your team. They look at your gene, your sex, and the age at which relatives were diagnosed. The schedule below is the usual starting point, not a prescription.
Keep every colonoscopy and biopsy report in one folder. The next doctor needs to see the last result.Organ by organ
Which checks are offered, and how strong the evidence is
Not every check carries the same weight. Colonoscopy has the strongest evidence by far.
Bowel
Colonoscopy every one to two years, usually from the early-to-mid twenties. It starts earlier if a relative was diagnosed very young.
Evidence
- Strong: clearly lowers bowel cancer deaths
Womb and ovaries
There is no reliable screening test. Women are taught which bleeding to report, and some centres offer regular womb checks. Preventive surgery is discussed once a family is complete, and only if you want it.
Stomach
A one-time test for a common stomach infection, treated if found. Some carriers are also offered an upper endoscopy every few years, especially if stomach cancer runs in the family.
Urinary tract and others
Some centres offer a yearly urine test. The evidence for this is limited. Pancreas checks are considered only when a relative had pancreatic cancer. Ask your team which apply to you.
Report blood in the urine promptly, whatever your schedule says.Not sure whether this applies to you?
Ask an oncologist
!
Symptoms that should not wait for your next check
Do not wait for a scheduled colonoscopy if you notice bleeding from the back passage, black stools, a lasting change in bowel habit, or bleeding after menopause. See your doctor within days and say you carry an MLH1 fault. Go to an emergency department the same day for heavy bleeding, or severe tummy pain with vomiting and no stools.
Across adult life
How the checks usually unfold over the years
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Soon after the result
A counselling visit, a test for stomach infection, and a talk about aspirin. Your first colonoscopy is booked if you are already old enough to start.
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From the early-to-mid twenties
Colonoscopy begins, then repeats every one to two years. Good bowel preparation matters, because small flat polyps are easy to miss in a poorly cleared bowel.
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In the thirties
Women start regular review with a gynaecologist. Stomach checks are considered if the family history suggests them. Colonoscopy carries on unchanged.
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Once a family is complete
Women are offered a discussion about preventive removal of the womb and ovaries. It is one option among several, and the choice stays yours.
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Later life
Colonoscopy continues for as long as you are fit enough to benefit. Your team reviews the plan whenever your health or the guidance changes.
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On your appointment letters
The words you will meet, in plain language
- Colonoscopy
- A thin camera passed through the back passage to look at the whole large bowel. Polyps can be removed during the test.
- Bowel preparation
- The laxative drink taken the day before. A clean bowel lets the doctor see small, flat polyps.
- Upper endoscopy
- A camera passed through the mouth to look at the food pipe, stomach and the start of the small bowel.
- H. pylori
- A common stomach infection that raises stomach cancer risk. It is found with a breath, stool or blood test and cleared with medicines.
- Surveillance interval
- The gap between one check and the next. It is shortened if polyps or other changes are found.
- Endometrial biopsy
- A small sample of the womb lining, taken in clinic, to check for early changes.
Commonly believed
Four things carriers tell us, and what is actually true
"My last colonoscopy was clear, so I can wait longer next time."
In Lynch syndrome a polyp can become cancer faster than usual. A clear test does not stretch the gap. Keep to the interval your team set.
"A stool test is as good as a colonoscopy for me."
Stool tests are designed for people at ordinary risk. For MLH1 carriers they are not a substitute, because they can miss polyps that colonoscopy would remove.
"A CT scan of the abdomen will pick up everything."
A CT scan does not show small polyps on the bowel lining, and it cannot remove them. Colonoscopy remains the check that actually lowers risk.
"Checks are only needed once I have symptoms."
The whole purpose is to find changes before symptoms appear. By the time bowel cancer causes symptoms, it is often larger.
Being straight with you
What this page cannot tell you
It cannot set your own schedule. Guidelines from different countries differ slightly on when to start and how often to repeat, and your team chooses between them for good reasons. Most of the evidence comes from studies abroad. Indian data on Lynch surveillance are still limited.
It cannot interpret your result or your reports
What your specific variant means is a question for the counsellor who ordered the test. What a polyp on your last colonoscopy means is a question for the gastroenterologist who removed it.
Who this does not apply to
This schedule is for people with a confirmed inherited MLH1 fault. It does not apply if MLH1 was lost only in a tumour because of methylation, or if you tested negative for your family's fault. Most people do not need Lynch surveillance.
If you live far from a colonoscopy centre, plan the next appointment before you leave the current one.Questions we are asked
Common questions about MLH1 surveillance
Why so often? My parents never had colonoscopies.
In Lynch syndrome a polyp can turn into cancer faster than usual, so a longer gap risks missing one. Checking every one to two years catches polyps while they are small and removable. This is the step that lowers bowel cancer risk.
Is colonoscopy painful?
Most people are given sedation and remember little of it. Some cramping and bloating is common afterwards. The bowel preparation the day before is often the hardest part. Ask for clear instructions, and follow them fully.
Can I have colonoscopy closer to my district?
Often, yes, if the centre does good-quality colonoscopy with full bowel preparation. What matters is a complete examination and a written report. Bring that report to your next review so your team can track changes.
Should I take aspirin?
A large trial found that aspirin lowered bowel cancer in people with Lynch syndrome. It can cause stomach bleeding, so it does not suit everyone. Discuss it with your doctor before starting, and do not start it on your own.
What happens if a polyp is found?
It is usually removed during the same test and sent to the laboratory. The result decides whether your next colonoscopy comes sooner. Finding a polyp is the system working as intended, not a failure.
Do women need anything extra?
Yes. Women need a plan for the womb and ovaries, because the risk there is high. That means reporting unusual bleeding promptly, regular gynaecology review, and a discussion about preventive surgery once childbearing is complete.
What if I miss an appointment?
Rebook as soon as you can. Missing one check does not undo earlier ones, but a long gap raises risk. Setting a phone reminder, or asking a family member to track dates, helps many carriers.
Who coordinates all these checks?
Ideally one clinic, usually a gastroenterologist working with a genetic counsellor and a gynaecologist. Call the CION helpline if you need help setting up the plan, and someone will direct you to the right clinic.
Your Specialists
Meet CION's oncologists. Bring your family history or genetic report to them.
Our medical oncologists see people with a strong family history of cancer, arrange genetic counselling and testing where it fits, and plan the checks that follow.
Medical Oncologist
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Medical Oncologist
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Medical Oncologist
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
Medical Oncologist
Medical Oncologist
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Where to find us
Our centres in and around Hyderabad
Addressed by landmark, because that is how this city navigates. One helpline books a consultation at any of these centres, and your team will tell you where counselling and testing take place.
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Sources
- GeneReviews (NCBI) — Lynch Syndrome
- National Cancer Institute — Genetics of Colorectal Cancer (PDQ) - Health Professional Version
- NCCN — Guidelines for Detection, Prevention and Risk Reduction
- Cancer Research UK — Lynch syndrome
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
Keep reading
Related pages
Colonoscopy every one to two years: why so oftenThe reasoning behind the short gapMLH1 mutation: which cancers and what riskThe risks these checks are designed to lowerGastric and small bowel surveillance in LynchWhen stomach checks are worth addingAspirin for Lynch syndromeWhat the evidence shows, and who it suits
Talk to us
Need help setting up your surveillance plan?
Tell us your gene result and your last check dates, and we will help you plan the next ones. Our team can take you through it in Telugu. One helpline serves every CION centre.